Chemotherapy for Stage IV
Comments
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Karen
So sorry to hear about all the stuff you are having to endure at the moment and really hoping things get a whole lot better for you soon. We need you bouncing here
Big hugs
Laurie x
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Sue,
i am also on Herceptin every week. And once done with 6 treatments it will go to every 3 weeks.
Had big treatment last wednesday and back is still hurting and pain in arms and sometimes my legs. The pain comes and goes, it is annoying.
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Karen - I am really praying for you. I kno how helpless my mom felt when she lost her sight to MacDegen. Am pleased tho that they think they can get a port in. I jes get sick thinking bout a pic-line, like it isn't hell enuf. Will pray pray that the meds start to work and you get some sight back and I BELIEVE you will bounce back....my love and prayers ALWAYS!
Kristen - my dx was in April last year...but until about Jan this year, did I finally 'wrap' my mind around it. I will NEVER me my ol self, but have settled and REJOICED that I am still here and tho not the same, am thriving and doing OK, in fact, better than expected. So once you realize what's happening, you'll come to terms, and live each day to the fullest with what you have. It's ALWAYS better than nothing....hope you do get on the neulasta, it has some bad SE's, as in bone, joint, muscle pain, but to be so low on white count is a bigger problem, to me anyway, than the SE's.
Kimber - Well...you depressed me....LOL.. jes kidding. But to kno you never got your brows/eyelashes back from 2007, ugh. So, something else I have to accept, even tho the Docs say they'll come back, I've been beginning to think they won't. You jes confirmed it for me, or at least made me realize they may never come back. Oh well...can't bitch too long about that...I'll be plenty happy to live NED for as long as possible with or without the eyelashes n brows. Funny how we let the vanity go when it means another day of 'life'. But I'm all good with that! Very lovely thoughts to Karen...I'll ditto that...and ask that you let Him carry you too. Hope things get better for you....my love and prayers always!
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Hey Ladies,
Have a question or two. I got my scan results yesterday and I had a little progression in my liver mets. I have already been on Navelbine and herceptin (6 months) next Xeloda and Tykerb (6 months). Anyways, I want to get on a TDM1 trial but I would have had to been on Adriamycin before and since I haven't been the doctor wants me to do this first probably for about 8 weeks then I can do the TDM1 trial.
Does anyone have any experience with Adriamycin, Cytoxin and Herceptin that's stage IV? I've heard it's harder than TCH, which scares me because that is what I was on originally and it was so hard on me.
Thanks.
Angie
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Angie, I am currently on Adriamycin, but I have been getting the low dose weekly as opposed to every three weeks......very few SEs other than the fact I lost my hair and also had a thumb nail removed because it was really loose and elevated and I was catching it on things.....other thumb and about four fingers are obviously on the way out. I do sleep a lot more than I ever did, but am able to work and function and do not feel the SEs are bad at all and I was really afraid since I had heard nothing good about the Red Devil. Actually I just found out from the PA today that I am about finished with it.....I just thought I was going to stay on it until we found out it was no longer working, but she says to me, well I see you are scheduled for scans and are just about to go off the Adriamycin.....this threw me for a loop and I asked her what she meant and she told me about the lifetime max dosage and how I will be at #18 and that equals 6 treatments and that is considered the max. I asked Can't I do more if my next heart test it good and she said No. What a bummer.....it was really working for me and I like things that work. Anyway, my experience has been good and I will find out if my liver mets shrunk after I have scans Friday.. What is the TDM1 trial?
Karen, So sorry you are having such a rough time....pray the eye situation improves soon.
Kimber, In spite of your own problems, you always have a kind word for others....You are an inspiration. Both of you are.
Kathy,....hope your SEs lessen and that this treatment is working for you. Alos hope things improve for you, Kristen.
It was in the 80s today....Way too hot for this time of year!!
I myself wish my eyelashes would fall out again. Instead they just keep needing to be plucked out because they came back funky after the Abraxane and scratch my cornea. I am going more and more often and today he said the cornea was really scratched and it HAS to heal. It looks like I am going to have to have that surgery on the lids so the eyelashes will be gone in the offending areas. Groan.
Anyway, I feel like begging to stay on the adriamycin since it has really been taking my tumor markers down. but we still have to see what the upcoming scans show before we can say it actually worked for me.
Look at all the K's on this thread. Marybe
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Gee Marybe, I never knew that there was a limit to the amount of adriamycin that one could have. I'm thinkin' that you should make your desire to stay on it known (I know you will) and see what the doc says. You have an amazing track record, and seems to me that your body knows what it can or cannot handle. Best of luck hon. SUE
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I had Hodgkins when I was 17. Breast cancer at 32. Reoccurrence at41 and reoccurrence with two small bone mets on my hip and a tumor on the scar where my mastectomy was. I am being treated three weeks on with taxol, herceptin and one week off. On the third week, I receive zomeda. I have three more rounds and I'll be done. I've been in treatment since September. I had some time off in December after being hospitalized with a duodenal bleed. Last PT scan showed that I did not have any cancer anywhere else except on my hip. There was no change after six rounds. I'm doing all I can to bring myself to finish off the last three weeks. I'm getting weak although I've been trying exercise throughout. I'm working almost full time. I'm starting to have leg swelling. I deal with the pain from the taxol with pain pills and it is usually worse after 24 to 48 hours. I'm starting to get real weak now. It's the numbness in my feet is starting to make me walk funny. I've also been having some jaw pain. Not sure if that is related to the zomeda or not. I'm just wondering if it's worth finishing up the last three weeks of taxol and herceptin since I'll be going on herceptin every three weeks and some oral drugs the rest of my life. Just don't know what to do. Not sure if it's going to really make a difference. The side effects (latest being wheezing at night), is getting to be too much. Not sure what to do. I'm tired.
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You need to tell your onco about the SEs you are experiencing....the numbness is neuropathy and can go away after treatment , but doesn't always....I was fortunate mine did. You should probably get a chest xray to check out your lungs...make sure the wheezing is not fluid build up....what do they call that pleural effusions? Also the jaw....there is a possibility of getting osteonecrosis from zometa, but I was on someta for about 10 yrs and did not get it....now I get Xgeva and the risk is there with that again, but as I said I have been very fortunate. I work in the dental field so for sure you need to get the jaw checked out. I sort of doubt that this would happen so quickly but you never know. lst thing today I would call my onco's office and tell them exactly what is going on.
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Marybe, Thanks for the info on Adriamycin. So far the treatments I've been on since stageiv have been pretty easy. Have you had scans yet? I also didn't know you could only have so many doses of it.
TDM1 is like a super herceptin. It's shown great results in trails. I first have to fail Adriamycin to get the TDM1.
Hope your new treatment is working for you.
Angie
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Hi ladies..I'm currently enjoying my week off from chemo. So crazy the things we learn to praise once we start chemo lol. I haven't thrown up or bleed now for two days..woohoo! Still have the big D but it is slowly getting better from the c diff. I slept most of yesterday felt like my lazy chihuahua...we cuddled in the sun by the patio and just snoozed all day. The simple pleasures now.
I have a question for those of you that have had blood transfusions. How did you feel prior? My counts are really low and dr considered it last week but I asked could we please wait till next Monday. I'm horrible tired constantly and I'm a bit confused at times..this is a scary thing to voice out loud but I'm forgetting everything..things I easily knew prior..I'm also very dizzy and foggy headed. I don't know how else to describe this..I know I've lost a fair amount of blood with the intestinal bleeding but now it is much better. Sorry I know this is a bit of a ramble..but I trust your opinions. I see the dr on Monday and will ask her.
@marybe oh my dear i would push to try to stay on the andriamycin..I was on a similar drug the epirubicin and felt like it helped a lot. You are such a treasure to us all so good luck getting on a good drug that keeps those markers down!
@sue oh my dear sorry I had bad news for you:( I just wish my chin hair would stay away..lol I'm bald everywhere right now I look goofy but I don't think I could fix ,pluck, shave much now anyways so I try to look at it as a hidden blessing..lol makes getting cleaned up really quick too:)
@angle..I will be praying you can get into the trial..woohoo I'm back on herceptin again and hoping it slows this junk down.
@sueopp ..hey sweetie..how r u doing? Go USAF!
@Shawn I'm so sorry Hun ..it looks like you have been through so much. That is a hard decision ..whether to do thevlast treatment or not. They say the chemo works for a while afterwards so you could say it is enough. I hopebyou get feeling betterband find peace with your choice!
@Karen and Laurie thinking of you both..please stay strong Karen ..we love you both!
Well I know I forgot people..but I think of you all so often during the day. I seem to have so much time to pray and be thankful for the little things. Hugs to you all Kimber0 -
Thanks Kimber! She's doing a little better now. I've been noticing at nights that she talks in her sleep, but I'm guessing that it is from the Chemo. So far Mom is doing better than last week. Her Onc told us that her tumor markers are going down, which is a good sign considering we've only had three treatments so far. I hope all is well with you!
Thank you so much for your support. : )
DV
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DV, Numbers going down are always a good sign. Kimber, I would think the transfusion would make you feel better right away....give you more energy. How are your Oxygen levels....my mother was very forgetful and had a tough time staying awake once she sat down and difficlut time concentrating and they found her O2 level was way down....maybe ask about that.
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Hey Kimber! I am just peachy, hon, and so glad that you are on the upswing too. Sorry you are a little foggy headed, but you have just an awesome amount of drugs onboard, plus your amazing body is fighting like mad - I think I would be a bit dizzy and confused as well. The doc will reassure you, I am certain. And I am with Marybe - a blood transfusion will indeed make you feel better right away. Keep on keep'n on, girlfriend, and keep me in your thoughts and prayers, as I keep you in mine. Go USAF! SUE
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Hi Ladies, It has been a while since I have posted and took a while to catch up. I have been working a ton but I have tried to peek in once in a while and check in on you. As always, wishing all the best to each and every one of you and wanted to say hello and welcome to the new folks.
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I thought I would join this thread and say hello. I was posting on my own thread about having treatment in Japan but after two infusions here in Tokyo there's nothing interesting to report. Seems like chemo is chemo no matter where you have it
. Hope everybody is doing okay. It's a lovely sunny day in Tokyo which I'm going to try and enjoy despite the frequent hot flashes. Sending positive thoughts to all.
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I recently heard about a chemo that goes directly into liver, thus fighting mets. Anyone know anything about this chemo?
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Hi Marybe,
I just read your profile and I was wondering if you thought your MDA visit a few years ago was worth the effort and time that it took? I have been thinking about doing something similar but I also feel like I have a great oncologist. I was Stage 4 at my original diagnosis in 1997. I would never have guessed in 1997 that I would have 15 years ahead of me. The years have gone by so quickly and I have had quite a list of chemos. I know I have been lucky. I am still working full time but the chemos that I have recently encountered are taking their toll. In the last year, I've blasted through gemzar, taxol and I am now on navelbine. Tomorrow is my 3rd navalbine treatment and Tuesday will be my first shot of nuepogen or nuelasta. My onco says there are still drugs that I have not had but I am also considering just getting a second opinion from someplace like MDA. Just wondered what your MDA experience was like. Thanks for reading through this message and for your time.
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Kimber I had several transfusions (had to start with 6 units as my hbg was a 4 to start). I didn't have ane SEs before but all that you've listed are what my onc asked about when my counts were low - tiredness, shortness of breath, dizzyness, forgetfulness. I have heard that you feel 100% better after transfusion (since I didn't feel bad before I don't have a clue). I know others have.
It's not as scary as it sounds just takes a long time. Go for it - you'll be glad you did.0 -
rjdrobyn, I think the trip to MDA was well worth the time and money. I was very fortunate that when I lst talked about going two of my best friends from way back went jumped in a volunteered to go with me....one had a friend who lives in the Houston area and we stayed with her (other than the days I had to be at the hospital early) and the other one got my ticket with her miles. Plus they were my extra ears and took notes for me when I had the consult with the onco. I was impressed with him as well as the facility itself and think it never hurts to get a second opinion. When you are Stage lV it is good to explore every avenue there is available.
The main SE I had with navelbine, as with most of them, was constipation. I found the neulasta shot rougher to deal with than the chemo.
15 years!! Wow! I am only 14. I am always happy when I meet people who have been doing this longer than I have. It gives me hope and that's the name of the game.
I am sending you a PM.
Anko, Did your husband's job take you to Japan?
Soleli, I do not know about that liver treatment, but at one time did investigate radiofrequency ablation and chemo embolization....was the treatment either one of those? I would be all for finding something that would target my liver since it's my main concern.
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Marybe, I don't know , it might have been chemo embolization. I'm going to google it , maybe find some things to discuss with the doctor in case the abraxane fails. Thank you
Can't believe you ladies...14 years, 15 years....you give me hope. So strong too! Marybe , you are so right about being your own advocate. I'm trying. Right now, I'm hoping for 2 years, 15....that would be a miracle.
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Well I finished my 14 WBR treatment a week ago and I am feeling the side effects.. I am tired, my taste buds are horrible, my legs feel wobbly, my hips hurts and I toss and turn all night.
Turns out this is all normal side effects of WBR -- Thank goodness cause I was about to go crazy!!!
Per my doctors orders -- I am weaning off the steroids and today is my last day on the steroids..
My hip issues are actually caused by the steroids my doctor told me -- so he gave me some exercise to do at my desk. We are moving to the next round of chemo for the few leftover issues/spots on my subclavicle.
I need a restaging PET CT scan in 2 weeks for restaging and an MRI in 7 weeks to see whats happening up there in my head!!
Peace and blessings to all!!!
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dellmonica, In spite of the SEs, it sounds as if you handled it well and hopefully soon you will get good scan reports and the SEs will all diminsh. What chemo will it be?
I got my scan reports and both the bone and CAT said no change.....I know I should be happy the tumors did not increase, but I was really hoping for some shrinkage. The CA 27.29 is now down to 2,378....that is about a 750 point drop from three wks ago. Tomorrow I will find out what the onco thinks about all this.
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just lurking, listening to you girls.. posting to bump this thread 3jays0
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Dell, good job hon, and well done. Now to chip away at those SE's. You are a real trooper. With you all the way - SUE
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Marybe, I know you were looking for shrinkage, but hope this happens for next time. Onward and upward! Best to you - SUE
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I'm lurkiing...keeping up with the posts. still hard to type and litte improvement in vision; bronchitis better but stil coughin my head off. one more off week till next chemo; had to have two neupogen this week. Today is actually the first day that that I feel like maybe i've turned the corner. Hard to feel like the life force is draininjg out of you.... but everything is temporary.
My son and 4 yr old gd have been here driving me back and forth to rads (6 more to go) and taking care of me... such a blessing!!
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((((Karen)))))
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Anne - sorry to say 'welcome' but I'll do it anyway. Sad this thread, or any thread, even exists, but truthfully, without these threads...I'd be a basketcase. Such a wealth of information, good advice, and genuine 'caring' going on...not to mention the HOPE. Look at MaryB and now RJDROBYN - 15 years, MaryB 14 years. It's so totally DOABLE! Did I misread, are u doing treatment in Japan or the UK?
Karen - it is a blessing to have help from your son and spend time with your gd. I pray so hard every night for all my sisters on this thread. And with my prayers goes White Hot Positive Light thoughts. To you...the strongest I can manage :-) !
Maryb - soo good to see you posting and sounds like things are moving in the right direction...maybe slowly, but better than the alternative. Thank you for being such a positive influence for us!
Neulasta was also rougher for me than the chemo itself. I could deal with the nasty/dry taste in my mouth, nausea, etc...but the bone aching was the worst...! Who was asking about the night sweats and hot flashes?...well...welcome to Club Menopause!! LOL....my best advice, try to get your sleep even if it means taking a pill every 2nd or 3rd night. Not getting into REM on a regular basis will eventually catch up to you physically as well as mentally...and for me, I'd rather take a pill a couple times a week than turn into that 'monster' I was back before I start HRT, before this BC, etc. Now I can't have ANY hormones...so a pill once in awhile helps keep me sane.
I kno I'm missing some of you fabulous ladies...know that I love ya all and send nothing but the best your way ALWAYS!
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I GET TO STAY ON THE ADRIAMYCIN!!! Saw the onco today and when I asked him if I could sing a waiver or something to stay on it since I knew I was going to have to quit soon he wanted to know what gave me that idea that we were going to stop it and I told him what the PA said to me. He said No, no, no....they calculate that for the regular dose and that the amount I am getting is so small I can stay on this a long time.....until I show signs of heart damage ( will do a MUGA every three months) and if in the event there is progression and we know it isnt working, then that will be the time to change. He said it's unchanged, that means stable. So it was a really good appointment today.....they got my premeds and the red push all done in 1hr. and 10 mins and I got to work on time.
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Congrats Marybe - what a RELIEF! I'm happy for you - you
are such a loving spoonful.
Have you lost your hair on low dose ac?
Kim0
